Lighten Up

August 12, 2010 at 11:25 AM (Family, friends, mommy guilt, Zen) (, , , , , , , , , )

Last week we had a mini-vacation and went to stay with friends on Martha’s Vineyard. We slept in, ate too much, had beers with lunch, napped on the beach (my favorite four-word phrase in the English language), went out one night without the kids and finished conversations. Ate s’mores. You get the idea.

I had succeeded in mentally reminding myself for three mornings not to forget to carry with us or administer my delightful meds (which must, you remember, be kept under refrigeration below 46˚). Since there were coolers all around, going to the beach, etc., I was able to dump them in and choke them down in the vacation-short space between breakfast and lunch.

Reluctantly, on Saturday we packed up our bags, double-checking under beds, nearly forgetting swimsuits and towels drying on the deck rail. I loaded my bottle of iced tea and the boys’ water bottles into the freezer to cool down before packing the cooler for the trip home.

The horde of us descended on a fish shack in Vineyard Haven to grab some lunch before catching our 2:30 ferry. As we waited with the hordes of other hungry people for our lunches, though, we realized we wouldn’t have enough time to eat and still make the boat. We grabbed our bag of sandwiches, said goodbye to the wife and kids of the family we stayed with, and the dad drove us the rest of the way to the ferry dock. Hugs all around, double-check the back of the car for our stuff, and bundle ourselves into the growing line of passengers waiting to climb aboard.

Son #2 dropped his Gatorade bottle for the seven-hundred-and-forty-third time, and I told him, “One of these times, that bottle’s going to split open, and then you won’t have anything…to…drink…but…water…until…” ::Crickets::

“Mr. W, did you grab the cooler?”

“No.”

Crap. “Left my damn drugs at the house!”

I turned and started running (wearing a 35-lb backpack, no less) out to the street where I could see our friend had just been waved into heavy Saturday August Vineyard traffic by the cop trying to keep order. Thank heaven his window was open.

“MARK! MARK!” He turned to look at me.

“I LEFT MY DRUGS AT YOUR HOUSE!!!” (In hindsight, not the best sentence to shout across a crowded intersection in front of a policeman.)

Revision: “I left my meds in your fridge!”

He pulled back into the parking lot, and my three gentlemen shuffled over and got back in the Jeep. I started in browbeating myself about my forgetfulness. “Jeez, I can’t believe I forgot it. I’m so sorry to make you have to come back. I can’t believe I didn’t remember that stuff! How many times did I remind myself that I had to get the cooler? What an eejit.”

This went on for about five minutes. Then I stopped for a second, and realized that I was the only one beating me up about it. Not even any teasing (unusual). And in a flash of maturity, I quit. No one seemed to be upset about having to miss the 2:30 but me. And on second thought, what the hell did I care? Why was I getting all jacked up?

We rode back to the restaurant to finish lunch (the best lobster roll I’ve had in years) with our friends. There was another ferry at 3:45, which meant we’d get home to pick up our dog a little later. No harm, no foul – it’s not like we had an appointment or something waiting back on the mainland.

This verbal self-flagellation is a lifetime habit for me, and I suspect for many others. Does it come from my desire to cut on myself before anyone else gets a chance to? Or am I so concerned about inconveniencing others (and possibly having them speak disparagingly about me after I leave) that I am trying to make sure they know I’m not really that inconsiderate?  Whatever the reason, it’s stupid, and a waste of energy.

It’s time to adopt the Dr. Seuss quote I heard recently and have come to adore: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I’m a good person, my friends know it, and my life is way too short to spend time browbeating myself for mistakes. Everyone makes ’em, and we’re all doing the best we can. Move on.

Photo credit here.

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Cancercoaster

July 28, 2010 at 11:51 AM (Faith, Family, Mood, Recovery) (, , , , , , , , , )

Last night my husband and I were watching that new Tony Robbins series on NBC. The episode featured Tony helping a couple break out of their ruts: at their wedding reception in Mexico, the exuberant groom had dived into the shallow pool to swim over to where his wife and her friends were dancing, and broken his neck. Quadriplegic since that day, they had ceased to be newlywed husband-and-wife, and become nurse-and-patient. During the course of the show, Tony had the excited husband and terrified wife skydiving over Fiji to show them that there’s no limit to what a paraplegic can accomplish but his imagination. (It was a pretty great show, and I’m a cynic. But I dig transformations. Jillian’s my homegal.)

At one point Mr. Wonderful and I were talking about the wife and the role she’d settled into, and how she was paralyzed herself by her fear of losing her husband altogether, her sense of injustice at having to suffer through a life so different than the one she’d imagined. In mid-sentence, Mr. W started to well up, and as I grabbed his hand, he broke down. He said he was remembering the night of my first surgery, and how he’d been feeling all the same things: angry with the doctors; helpless at my illness; terrified of our new future and what it would bring; sad for me and what I would have to go through.

After a long hug, we moved on, but I realized that in addition to cementing our dedication to each other, the moment represented just another stop on the wild ride we’ve been on since 2006. Cancer diagnosis? Down. Find the right oncologist and a plan of attack? Up. IP chemotherapy? Way down. Finish treatment? Up. Nine months of remission and a big thank-you party? WAY up. Recurrence? Doooooown. You get the picture. Cancer patients and those who love them learn an incredible amount in the simple task of waiting: waiting for test results; waiting for scan results; waiting for the surgery date.

I’d love to say that a zen-like patient peacefulness is the result of all of this unpredictable change. But our reactions to the ups and downs have yawed wildly as well. Sometimes I’m able to accept a recurrence notice with resigned determination, while my mother bursts into (prohibited!) tears. Sometimes I come home from a simple office visit and a blood draw and snap at everyone in the house and Mr. Wonderful calms me down and gives me needed space. Other times he rages against his lack of control and we argue about something stupid like taking the last cold Diet Coke out of the fridge (a hanging offense).

I’ve had a busy month in the up-and-down department. From the down of intractable lung mets and decreased physical activity, I sprang back up with the great PET scan results, confirmed by CT last week. But not all the way up, because my left leg swelling kept increasing, and everyone (including me, in tears on Monday) feared it was another blood clot, which would mean blood thinners, which would make me ineligible for the trial that was saving my life (way down). Yesterday I had an ultrasound that showed no trace of a clot, meaning I am cleared to receive lymphedema massage and continue the trial (up Up UP!)

Which brings me back to my post on Friday about good support. By talking openly and honestly, and patiently listening without judgement, Mr. W and I have been able to weather the vagaries of this unpredictable odyssey. It’s definitely been a long learning process, with exemplary moments and embarrassing blow-ups. Often, the patient-listening-without-judgement has had to come in the form of an outside party, namely our therapist, who I maintain is a priceless aid in my recovery. But the result has been the smoothing out of the rough places that used to trip us and send us (and by “us” I mean our whole support team) spiraling off in different directions – now we hold each other up and ride on together.

Certainly the clichéd “fullness of time” has lessened the height of the peaks and the depth of the valleys. I prefer to think of it as a mosaic, or a Seurat painting: up close, each tile or spot of paint seems powerful, distinct; but with distance, the whole image becomes easier to see, the emotional shapes easier to recognize, the cohesion and strength of our family more visible.

I’ve never liked roller coasters. Too fast, too scary, too much stomach-in-the-throat. Since I have to be on this one, I’m glad I have reliable hands to hold onto. Who are yours?

Photo link.

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Finally.

July 17, 2010 at 10:29 AM (Energy, Mood, Treatment) (, , , , , , , , , , )

For those who aren’t on facebook (I understand, really), you might have missed my jubilant post-blog update on Monday: THE TRIAL DRUGS ARE WORKING. Those nasty little grey capsules that make my mouth taste like a dirty ashtray are actually worth the loss of my taste for chocolate. (Sad but true.)

I climbed out of the PET scanner on Monday and (after a brief trip to the cafeteria for my first food in over twelve hours) went straight to the Phase I doctor’s office. His preliminary read of the scan thirty minutes later showed a “marked decrease” in the metabolism* of the cells in my calcified tumors and lymph nodes, the ones that we had pegged as stable. While he offered no opinion of the new mets in my lungs, and I’ll have to wait for a full radiologist’s report on the scan for that, he was very excited about the “dramatic” change in my tumors. He said that the trial had shown the best results for ovarian patients, and that they were thinking about designing a Phase II trial for ovarian patients based on the good results. Including mine!

I’m beyond thrilled to get some good news for the first time in eighteen months, and REALLY glad that all of this rigamarole that they (Big Pharma) are putting me through for this drug might actually have an impact on other patients of this crappy, insidious, sneaky-ass disease.

Next week: further results of the PET scan; CT scan and results, and a week off the drug. Rash? No rash? Increased energy? We’ll see.

But you can quit mentally divvying up my couture for the near future. Vultures.

*PET scans work by reading the rate that your cells metabolize an injected radioactive sugar solution. Cancer cells metabolize sugar at a much higher rate than healthy cells, so after sitting with the solution in your bloodstream for an hour, they run you through a scanner and read the “hot spots” that have metabolized the most radioactive solution. These are measured by the amount of radioactivity they emit, and the rates are compared from scan to scan.

Photo courtesy images.

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Back Seat Driver

July 12, 2010 at 11:28 AM (Faith, Hair, Treatment) (, , , , , , , , )

A friend and I were talking this weekend about her upcoming vacation. She and her family are flying to Wyoming and renting an RV for a week of sightseeing – mom, dad, six- and eight-year-old sons. She was joking about her outrageous organizing tendencies, and her pre-vacation lists of what to pack, what to do, what to buy. We both decided, though, that the way to go about a traveling trip like this was not to adhere stringently to an agenda (“Come on, kids, eat quickly! We’ve gotta get going if we’re going to make the World’s Largest Ball of Tinfoil before 3 PM!) but to follow the planned route easily, staying relaxed and making allowances for spontaneity and unforeseen events (like ice cream stands). There are far fewer temper tantrums, from children or parents, if everyone’s going with the flow.

I thought about how this is the best way to parent, too. We all have preconceived notions about what parenting will be like (toddlers cheerfully playing house; our elementary school kids racing off the bus to give us a hug and tell us about their day; family dinners with animated conversations, in-jokes, and clean plates), and one of the hardest parts of growing up into our roles is realizing how far reality diverts from those notions (toddlers throwing poop; elementary school kids sulking into the house without a word; family dinners where everyone refuses to eat, speaks only potty talk, and is sent from the table in tears straight to bed).

Cancer has been like that. As I digested my diagnosis, back in May of 2006, I put together my idea of what treatment would be like: lose hair, spend summer in bed, fight like hell, receive clean CT scan, move on with my life. But as I struggled through treatments, trying to maintain some semblance of my former self, feeling horrible, I realized cancer had other ideas.

Boy, does it ever. My vision of a complete remission was marred by not one recurrence but two, the second of which refuses to let go of my innards. My vision of flowing locks has been replaced by persistent brown Nancy-Reagan-head and the cruel fact that no one checks me out any more, because I look like their mom. My early forceful, driving thought that I’d kick ovarian cancer to the curb and live a long, grateful, loving life has taken a back seat to the slow but steady drip of the odds stacked against me.

I’m not throwing in the towel. Not by a long shot. I’m still in it to win it, whatever road I have to drive down to get there. If this trial doesn’t work (I’ll know more by this afternoon) I’ll start another one. I might bitch about side effects, but I’m damn glad to still be here to experience them. I’m learning that the more I roll with the punches, accommodate changes in schedule, drugs, doctors, scan results, pull back my long-view to three months instead of three years, the fewer temper tantrums I need to throw. My expectations of life as a cancer babe might be growing up.

My hair looks a disturbingly lot like this.

photo courtesy http://www.dcrw.org

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Give Me a Break

July 7, 2010 at 4:14 PM (Energy, Mood, Treatment) (, , , , , , , , , , )

The trial continues. Week Two of taking the fabulous drug daily, all nine capsules of it, and I’m beat. Possibly from the effort required to swallow nine capsules at once. I’ve never had a problem taking pills in the past, but this really frosts the cupcake. Why, in our era of superb medical advancement and death-defying technology, is this pharma company incapable of cramming 450 mg of my mystery drug into five capsules? Or three?

Aside from increasing my snark quotient, said mystery substance is wearing me out. Maybe it’s all the peristalsis, or maybe I’m just getting old. Or possibly since I’ve been actively fighting this beast for over eighteen months now without a break, I’m losing my elite-athlete-like (ha) endurance. I’m a lover, not a fighter. And I don’t think four weeks off to wash the Avastin out of my system counts as a break. Every time I stop to examine my alternatives, though, I realize: they suck. So back at it I go. But I’m really sick of:

  • Flirting with nurses to make sure I’m the favorite
  • Peeing in a cup
  • Repeating my last name and date of birth to prove I’m really me (who the hell would pose as a cancer patient?)
  • Sleeping with my support stocking on
  • Having the inside of my mouth taste like an ashtray and not getting to smoke first
  • Being too tired to play tennis, swim, ride a bike, walk up the stairs, cook dinner, host a playdate
  • Short hair

On the bright side, I am not bald, throwing up, peeling, recovering from an abdominal incision, or dead. I can still drive, give directions, boss my kids around, surf the internet, and laugh at a dirty joke.

I think I need an attitude adjustment. Possibly an expensive spa treatment. Fortunately, I have one scheduled for Thursday morning. Hope I can drag my sad old carcass in there.

Thanks for listening. We now return you to your previously scheduled Eastern Seaboard Inferno of a day.

At least I can still nap.

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Low Simmer

June 14, 2010 at 1:30 PM (Energy, Hair, Mood, Treatment) (, , , , , , , , , )

Lying around and growing tumors is hard work – I’d forgotten how much it takes out of you. I’ve been drug-free for two and a half weeks now, and I can feel the evil creeping up. Which gets a girl to thinking: thank heaven for modern medicine. How much time would I have without the upcoming trial? Six months? Four? What would my quality of life be? Yeesh.

Fatigue is a constant companion now – I feel like I’m wearing a diving weight belt around my waist. Going to the gym is a bit of a farce, and if someone hadn’t invented the Chuckit!, I think my dog wouldn’t be speaking to me anymore. The cat, on the other hand, is so glad to have me back on the lazy side of the fence.

My trial coordinator said that they are getting “encouraging” results from GDC-0941, and my oncologist is “very excited” to get me on board. I have a full day of tests (EKG, CT, blood tests, urine culture, etc. etc.) set up for today, and then I start the trial on the 21st. I’m feeling optimistic, but wondering how much progress the tumors will make by then. I hate to give up any ground from my chemo of last summer – it feels like I’m betraying the hair loss, fatigue, and all the side effects I went through to “let” the tumors grow back. Especially since I currently resemble Mike Brady. Yea, hats!

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Insult, Meet Injury

May 21, 2010 at 10:16 PM (Energy, Mood, Treatment) (, , , , , )

I think I’ve been pretty reasonable during this hideous process. I’ve accommodated last-minute schedule changes, long-term expectation rearrangements, physical limitations, radical downgrades in physical appearance. I’ve taken it all on, maybe not smiling but resigned, and kept on going, because, really, what choice do I have?

Consider the camel’s back broken. Wednesday’s CT bad news led to this afternoon’s phone call from the clinical trial coordinator for my PI3K trial, and after a little dithering back and forth, she said that my onc wants me to start on the 21st of June. And the joys of clinical trials include really frequent office visits, which will start on the 21st and continue for the 22nd, 23rd, 24th, and 28th of June.

Astute readers (Cheesesteak) will note that that coincides with my not-widely-broadcast trip to Washington for a First Descents kayaking trip. I was really, really, really excited for this adventure; it’s totally unlike me to take on a physical challenge of this nature, and I was beyond excited to meet and make friends with the other under-40 cancer survivors on the trip. Alumni tend to refer to their “FD Families”, and I want one.

But I have to cancel. (I keep writing “cancer” – damn you, Freud.)

A quick email check-in showed that they have no other kayaking spots available for this year, although they could put me on the wait-list. I might be able to get a spot on a climbing trip in September.

Right now I’m so hopped up I can’t even conceive of this change. I booked plane tickets; bought an inordinate amount of the suggested “non-cotton” clothing. Was making peace with the fact that I’ll probably end up upside-down under my kayak and hoping I’ll have the wherewithal not to drown. I WAS EXCITED.

This is really over the top. I’ve been good; I’ve taken my lumps and (mostly) not complained. I’ve missed events, given up hope of starting a meaningful career; foregone chaperoning field trips. Gotten used to looking at the middle-aged lady who lives in my bathroom mirror, and the fact that she can’t wear high heels for more than thirty minutes. Accepted that my left leg is a whole pants size larger than my right. I’ve abandoned plans for a 5k, or the thought of becoming a decent tennis player. But I wanted cancer to give me something for all the stuff it’s taken away, and I thought that five days of kayaking and bonding with other like-minded cancer ass-kickers was an appropriate and reasonable expectation.

Apparently not.

Photo courtesy http://www.firstdescents.org

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Caller ID

May 20, 2010 at 11:37 AM (after chemo, Faith, Treatment) (, , , , , , , , , , )

“Private Caller” is seldom a good sign. It’s usually some telemarketer totally flouting the FCC regulations that specify that our number is on the do-not-call list and making my marketer husband hot under the collar.

Or it’s The Cancer Factory. Which is was this morning. And not only just the hospital, but my actual oncologist. The day after a scan.

::cue ominous music: dum Dum DUMMMMM…::

Right. Pelvis and abdomen stable, she began. (Always lead with the good news.) Lung tumors progressing. (Ah, there it is.) Slowly, but progressing. Which, frankly, I’ve known for about three weeks. Ever since the allergy season started, I could tell.

Cancel the cytoxan. Bring on the PI3-Kinase inhibitor trial. They’re holding a spot open for me (let’s say it again: thank heaven I’m in Boston!), so as soon as my cytoxan wash-out (4 weeks) is over, I’m in like Flynn. Unless my tumor tests positive for the B-RAF genetic marker, in which case I would be eligible for that trial. And we all know how I love making important decisions. (Or maybe you don’t: when I used to have to choose between A and B, my mother would write each option on a piece of paper and mix them up behind her back, then I’d choose a hand. And invariably want the other option more. Pathetic.)

So we wait. Again. Lovely.

Maybe without the cytoxan I’ll have a little more energy for OMG! this weekend.

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Feelin’ Funky

February 22, 2010 at 5:10 PM (Uncategorized) (, , , , , , , , , )

I kinda spent the weekend moping. Not off-by-myself, staring-at-the-TV, gorging-on-chips moping, but quiet reading, contemplation, unusual lack of exercise. I even vacuumed.

I don’t want to say that the results of the scan have gotten me depressed, but they threw me for a little loop, more than I would have expected. I guess I’ve been feeling so fine on the Avastin that I started to get a little cocky, and as anyone can tell you, that’s a sure sign of a fall waiting to happen. It’s not as if I’d stopped worrying about it (“Just say it, wimp, ‘the cancer'”), MY cancer, but it had receded to a place where I was actually thinking about learning about a new job, going on a kayaking adventure trip and feeling strong, planning summer trips and activities and not worrying about exhaustion or side effects.

Now, it’s not as if I’m going to keel over next week. The tumors are in the one- to three-millimeter range, and won’t impact my lung function for another six months or so even if we do nothing about them. And I still have lots of options for treating them. But as I was making pizza dough on Saturday, it hit me: some clinical-trial med they put me on might have hideous side effects. This might be the best I feel for a while. And before I could stop myself I took a little march down memory lane: summer 2006, unable to climb stairs without a break; nannies; supporters delivering meals. Mom trekking up here ten out of every 20 days to help run my household. Bald, rotund, shredded.

I feel like Mike Myers on SNL when he played that little hyperactive boy Phillip tied with a leash to the jungle gym: no matter how I try to get away from the damn cancer, eat right and exercise my feet off and do yoga and live in the moment and play with my kids and take tennis lessons and plan kayaking trips and chairing committees and all of it, I’m still tied to this effing jungle gym. 

At least I look better than Nicole Kidman’s duck-lips.

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